Plain and simply put , lymphedema is a build up of lymph fluid below the surface of the skin, caused by damaged or under-developed lymph nodes. Lymphedema can cause massive swelling and skin sensitivity to the effected area. It can also cause fatigue, weight again and depression.

Most websites that I come across list it as a side effect of some types of cancer treatment. This type of lymphedema is called secondary lymphedema. But I do not have cancer. What I have is primary lymphedema. This means that even though I didn't show signs of the disease at birth, I was born with it. More than likely, someone in my family carries a dormant gene that was passed on to me but didn't make itself visible until I hit puberty. I am told only 1 in a few thousand people will be diagnosed with this form of the disease and most of them are or will be women. This is one of the rarest diseases I have ever encountered and the lack of the attention paid to it is horrifying. Many times I have visited a doctor and have had to explain what it is. I have even had doctors tell me that's not what I have and then later, after listening to my story and doing a little research, retracting their statements.

This disease is frustrating to say the least. Most equipment and effective treatments aren't covered by a vast majority of insurances. Doctors have been shoving the same water pill down my throat for years. And for that reason, I've been "self-soothing" for years. They all say maybe if you lose a few pounds, or change what you eat it will get better. But I was once a regular, agile and athletic teenager and no amount of exercise and dieting could have prepared me for this. There is no cure for this disease and there are no drugs to control the swelling and no amount of counseling that can help you better deal with the fact that this is your life for the rest of your life. All you can do is plan strategically and hope for a good day.